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The proces of recovery

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Old 11-13-2017, 05:19 AM   #1
Lebber
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I have a question for the people who have been on this board for a while. I know this is a question thqt cannot be easily answered. But i wondered how does recovery occur? How does the proces go? Some members have been around for a while so you must have seen a lot of people who got better.

For ex. It has been almost 4 months for me. And the way to recovery has been with many ups and downs and isn't linear. The first 2 months were horrible. I could fill a whole page with symptoms. I felt really bad all the time. In that period i often had 1 or 2 good days followed by 4 very bad days. Now, almost 4 months later. I only have 3 symtoms left (sleep issues, fatigue and tinnitus).

The way symptoms dissapeared weren't linear. Some dissapeared and never came back. Some dissapeared, came back later and then went away again. Besides that, some magically went away from one day to another. But most gradually went away. Like blurred vision, just went away like that and never came back. But for ex. Seeing spots went away very slowly over the course of 3 months. I would keep seeing less and less spots (some days more) and now its gone.

I think this is actually what makes pcs so scary sometines. Because it goes so slowly and sometimes it comes back for a while. I guess with this question i need some reassurance that everything will be alright.

For my remaining symptoms the recovery has been a very bumpy road. I had bad insomnia. Difficult falling a sleep and keep waking up every (half) hour. Then is started to have some night where i only woke up 4 times. Now, i only wake up about 4 times a night and only have a few bad night where i wake up a lot. Last week i even had a night where i slept 6 hours on end. Same with the tinnitus. Since a few days my left ear isn't continuious anymore. I only hear it a few times a day in my left ear. Right ear is still continuous, but i also got somewhat better. It's also with a lot ups and downs. Do know, that a month ago the tinnitus was so bad i could hear it over almost everything. Now i can sit in a quit room for most of the time with no problem.

The biggest problem for me is the fatigue. Because of that i have been living a sheltered life for the past months. I only went outside when needed. I tried going on small walks but i would collpase after 10 minutes of walking. I did got better. Untill 2 weeks ago, i would always wake up and wish for the day to end as fast a possible. I was that fatigued. I couldn't do anything but just sit and rest. Nowadays i can do small chores with a lot of resting in between. But is still nowhere close to normal. The fatigue is the thing that scares me the most. Because it has been the most persistent symptom and betters extremly slow. It also has taken a toll on my relationship. My husband (god bless him) has to do everything for me. He has been so good, but i notice that he has a lot to endure because of this situation.

So most of the time i think that this will all be over someday because there has been tremendous progress. I'm actually suprised that I've been able to heal from so many symptoms. And i am very grateful for that . But other moments is still get scared and think "will i ever get better?". Do you guys see this recovery proces with other people? Where the improvements are on and of for a few weeks and then are there to stay. And is fatigue often the last thing to dissapear? I like to think of it as my body that is putting all it's energy into healing.

Anyways thanks for reading this long post. I know this isn't something that can be easily answered and it just about being patient.
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Old 11-13-2017, 11:08 AM   #2
Mark in Idaho
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Yes, for most people recovery is a roller coaster. For some it is a very wild roller coaster. Sleep quality is often the cause of many of the bad days, and fatigue days. Over-stimulation can also be a cause of fatigue. Over-stimulation can cause a mental crash were you cannot do anything but stop and zone out.

One of the problems with sleep can be over-stimulation. The PCS brain often loses its ability to ignore stimulation. A normal brain puts considerable processing power into sorting and ignoring stimuli. The PCS brain struggles to do this. It wants to pay attention to everything. This can be just annoying or be truly mentally disturbing where the mind cannot settle down. It can trigger bouts of extreme sleepiness.

Learning how to moderate one's environment can help. Reducing triggering sounds and visual stimuli can help. Using masking sounds or visual images can help. For example, I and a PCS friend I know both use the TV to help us sleep. We use headphones to not disturb others with the volume low. Reruns work great. The mind knows what is happening so it is easy to drift away. I end up having dreams that fit the dialogue. It is odd but I often get my best sleep this way.

What is going on in your mind when you wake up? Are there any specific stimuli that you are aware of?

I use a weighted blanket because I sense the air around me that is a bit cooler than the sheet and blankets. The weighted blanket fills in these air spaces. I also need no stimulation sleep clothes with a similar feel all over my body. In the beginning, I dreaded going to bed because it was miserable. Waking up to stressful dreams was a real struggle.

Has your husband noticed anything about your sleep? Strange breathing patterns, twitching, etc?

The seeing spots is indicative of the brain not being able to ignore stimuli. In most people, those spots don't go away because they have always been there. Floaters and eye debris can catch the attention of the mind. Over time, the brain just regains its ability to ignore them. Many of us have sought out an ophthalmologist over concern for these spots and been told that they are normal and always there. If we look for these spots, we can find them but we can return to ignoring them again.

The tinnitus does not make sense. Experts do not understand it. It may be that we just have to learn to ignore it or mask it. I have loud tinnitus in my left ear and at a more tolerable level in my right ear. Learning to accept it and ignore it is usually the best solution.

When you experience fatigue/collapse during a long walk, what are your symptoms? What is your environment like? Traffic, people, voices and other sounds?
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Old 11-13-2017, 12:02 PM   #3
Lebber
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I have been reducing stimuli during the day and i do feel it helps. Altough i don't feel the overstimulation consciously, it helps me fall a sleep faster when i don't have much stimulation during the day. The collapsing is more like a general malaise and extreme fatigue. It happens when i go for a walk in the forrest or when i do to much physical stuff at home. But it hasn't occurred in the past 2 weeks since i rest more. I really think it is fatigue and lack of good sleep.

My husband hasn't notices anything strange during my sleep. I have asked him, but no twitches nor strange breething. We both think it is because of the tinnitus. Because my sleep started to get worse when the tinnitus got worse. I often wake up with loud tinnitus. You have to understand that i have very fluctuating tinnitis. It's there 24/7 but has a multitude of sounds and volumes. I always hear static noises and sometimes there are other sounds that comes and go. It is never the same for an hour. That is also what bothers me the most about tinnitus and why I'm sometimes desperate for it to go away.
When i have good days where the tinnitus isn't so fluctuating and is just static, i sleep much better and cope with it better.

I also use a heavier blanket for sleep. Sleeping with tv or noises doesn't really help for me. Falling a sleep isn't the biggest problem. It's more about staying a sleep.

Btw thanks for the info that this is a rollercoaster for most of us. I needed it because i had a bad day today. The tinnitus in my left ear is back since this morning it's really with ups and downs.

The tinnitus does get significantly better after a visit at the osteopath. So far I've only went twice (she is always fully booked so i have to wait 3 weeks in between). Thursday is my next visit and I'm excited. My neck muscles are getting tighter again. I think my tinnitus is mostly connected to the whiplash. But then again it is to complex to know for sure.

Very interessting on the seeing spots. I didn't know that. It's 99% gone though. I maybe see it once every few days.

Btw i recently started with medicinal cbd oil to see if it would help with sleep and tinnitus. I want to try this before asking sleep meds. It has 0% thc and only contains cannabidiol(acid). I have read that this is way safer then sleep meds. I'm still searching for the right dose though
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Old 11-13-2017, 12:20 PM   #4
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Oh i also wanted to mention that my sleep quality did get better the past few weeks. I don't wake up from every little sound in the enviroment. That was a big problem before.
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Old 11-13-2017, 02:27 PM   #5
Mark in Idaho
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Have you tried having a snack before bed? A complex carb and protein snack may improve your blood sugar during the night. You may have blood sugar that drops then rises in cycles. A snack or even a glycemic drink like Glucerna may give your blood sugar some stability if it needs it.

My tinnitus appears to fluctuate with my blood sugar. My tinnitus will spike just after eating something. A cold drink can also kick it off.
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Old 11-14-2017, 04:28 AM   #6
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Yes i eat a snack before bedtime. Amazing how you found that it fluctuates with your blood sugar. Mine fluctuates with neck movement. Especially when my neck is stiff. It also fluctuates during the night when my neck stiffens and i have to chance sleeping position. It gets better during the day when my neck is more loose.

Do you have any tips on neck stretches? Since yesterday my neck is blocked again.
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Old 11-14-2017, 04:44 AM   #7
Mark in Idaho
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I just learned I needed to keep my head and neck is a stable straight position. I've learned to get comfortable so I can stay in the same position all night. I usually sleep flat on my back with no head lift. I bunch my pillow up around my ears so my head does not tip to the side. It took years before my neck was stable enough to sleep on my side. I would sleep with a pillow under my knees in the beginning while I learned to stay asleep on my back.

For me, If my head tipped forward or to the side, especially to the left, after 19 or 15 minutes, neck inflammation would cause Central Sleep Apnea and I would stop breathing. This would cause a cycle of on and off breathing and disrupt my sleep such that I would have stressful dreams, almost nightmares.

It took a lot of work to get my sleep quality up.
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Old 11-22-2017, 01:36 AM   #8
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Lebber,

You aren't alone on the rollercoaster.

PCS is a strange journey and for me many things were unexplainable, unpredictable and unquantifiable. Many ups and downs and blindsided by symptoms I thought were long gone.

I was surprised Sunday by needing to exit church during the singing because of volume bothering me...been over a year since that happened last probably but the good news is it didn't upset me, i just walked out to a quieter place.

The good news is life returns and I dare say I'm better for it, I've learned a lot.

Bud
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Old 11-24-2017, 11:50 AM   #9
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Everything Mark and Bud says is very true. I'd also like to add that probably my biggest step toward recovery was accepting my "new normal." Once you do that there is a lot of opportunity to move forward and indeed those who make a "full" recovery have probably also accepted new realities.

Time moves on. You can't bring back the pre-accident person. You can accept the post-accident person, however.

I definitely know I won't ever quite be the same as I was before my accident (I still have slight balance and vision problems and probably always will), but my life is extremely awesome. Better than before, honestly, if that makes sense. The fatigue is definitely one of those things that has gone away with time and I in fact have the same energy levels that I did before the accident. I might need a little bit more sleep. . .

I'm not on here much at all anymore, but Mark and Bud have fantastic input and are great people.

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Originally Posted by Bud View Post
Lebber,

You aren't alone on the rollercoaster.

PCS is a strange journey and for me many things were unexplainable, unpredictable and unquantifiable. Many ups and downs and blindsided by symptoms I thought were long gone.

I was surprised Sunday by needing to exit church during the singing because of volume bothering me...been over a year since that happened last probably but the good news is it didn't upset me, i just walked out to a quieter place.

The good news is life returns and I dare say I'm better for it, I've learned a lot.

Bud
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